The Pseudoscience of Chronic Lyme

In 2009 science writer Laurie McClellen’s husband, Pat, fell ill. The exhaustion came first. He grew too tired to exercise. Even the office left him fatigued. “He was so tired that he needed a two-hour nap every night after work,” McClellan wrote in her account of the ordeal. Then came other symptoms. One night Pat forgot the name of their subway stop. He complained of cold feet, and began to stumble. His joints burned.

McClellan’s doctor suggested Pat might have chronic Lyme disease. The test came back negative, but she prescribed a course of antibiotics anyway. Pat began to feel a little better. At a clinic specializing in Lyme disease, “Pat was given prescriptions for a sophisticated regimen of drugs to control his symptoms, plus multiple antibiotics to fight the infection. He would need to take the drugs for the next year or so. He started swallowing some twenty-five pills a day, and the pace of his recovery picked up,” McClellan wrote.

While all infectious disease doctors acknowledge that Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme disease, can stay in the body for years, most believe that a short course of antibiotics is enough to wipe out the infection. However, an increasingly vocal group of patients, advocates, and doctors believes the bacteria can hide out in the body and persist even after treatment, causing a laundry list of vague symptoms — everything from night sweats and depression to back pain and vertigo. They argue that a cure requires not weeks but months or years of strong antibiotics, and that relapses are common. They portray Lyme as “a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable,” according to one group of infectious disease physicians from Johns Hopkins.

A new study finds that people who have been treated for Lyme disease and then later appear to relapse are typically suffering from a new infection. In the 1990s, Robert Nadelman began collecting blood and skin samples from people with Lyme disease. He identified 17 people who developed a bullseye rash, a hallmark of Lyme disease, more than once. By examining the genetic makeup of the bacteria found in these rashes Nadelman showed that these later episodes were actually new infections, not relapses.

That’s not to say that everyone who claims to have chronic Lyme has had multiple infections. In a review article published last year, Paul Lantos identified seven studies conducted in endemic areas that included nearly 2,000 patients with suspected Lyme disease. “Only 7–31% had active Lyme disease and 5–20% had previous Lyme disease,” he writes. “Among the remainder, 50–88% had no evidence of ever having had Lyme disease. Most of these patients had either an alternative medical diagnosis or a functional somatic syndrome such as chronic fatigue syndrome or fibromyalgia.”

Why would a science writer choose to accept a diagnosis based largely on pseudoscience? Because she’s human, not Vulcan. As much as it pains me to say it, personal anecdotes are more powerful than scientific facts and figures. In the article, McClellan tells us about her friend’s teenage daughter, who was deemed anxious by one neurologist, was later diagnosed with chronic lyme, given a prescription for a year’s worth of antibiotics, and recovered. That’s a powerful narrative.

What’s more, certainty and action are always more attractive than uncertainty and inaction. McClellan writes, “Pat, who’d been climbing mountains a few years ago, now struggled to walk a city block. Two doctors were telling us that he had a certain disease, that it was treatable, and that he could recover. But the standard medical authorities were telling me that this condition didn’t exist and that the proposed treatment was ineffective and harmful.” Is it any wonder that McClellan chose the promise of antibiotics over the question marks offered by mainstream medicine?

The Hopkins group argues that Lyme advocates are part of the same antiscience movement that denies that HIV causes AIDS and accepts that vaccines cause autism. “These advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science,” writes the group from Hopkins. How can evidence-based medicine compete?

16 thoughts on “The Pseudoscience of Chronic Lyme”

Which science is more pseudo? The “alternative medicine healers” or the Medical Industrial Complex? The evidence base of so called evidence based medicine is based on corruption. For many years now journals like JAMA, the center of the mainstream, have called into question the validity of a system where a majority of the clinical trials are funded by the manufacturers of the pharmaceutical in question. Negative studies are routinely left unpublished. The original study designs are tailored to give a positive result for the company supplying the cash. Billion dollar fines are levied against pharmaceutical companies for pushing non-approved indications for drugs. Children are diagnosed with new psychiatric disorders and placed on neurotoxic cocktails pushed by “thought leaders” payed by the companies selling the cocktails. Fads labelled as prevention are routinely debunked with time.

The harms done by alternative medicine are minuscule compared to the systematic perversion of science that we commonly refer to as evidence based medicine.

I have just one question: what if the red rash is a localized symptom that only appears at the site of a tick bite, and not in cases of relapse due to a lingering systemic infection? In that case the study sample would have inadvertently been limited to re-infection cases. I imagine the researchers addressed this – but how?

Heather, my understanding is that the red bullseye rash does not appear in every case of new infection.

In response to this thought provoking article, it seems to me that if someone is ill and the doctors feel it’s not Lyme (and let’s accept that for the sake of argument), then it’s incumbent on the doctor to figure out what it IS and treat that. I can easily imagine the patient has something else that is susceptible to antibiotic treatment. The patient gets better and patient and doctor assume it was Lyme without ever knowing. Or another doctor assumes it was not Lyme and argues the patient should not have been treated at all. That doesn’t seem like a very helpful approach to me.

I am not arguing for arbitrary or non evidence based treatments. But it does seem that a lot of chronic conditions are difficult for most doctors to diagnose. Perhaps they need better training and more time to think?

Jennie – Totally agree. What IS clear is that these people are ill. And how frustrating to have your doctor dismiss your symptoms as unimportant or invented. But I don’t think physicians should be giving years-long courses of antibiotics to people who exhibit vague symptoms and show no evidence of being infected by Borrelia burgdorferi or other bacteria. It’s ineffective at best and medical malpractice at worst. What’s especially heartbreaking are all the charlatans trying to capitalize on people who are sick and suffering. See http://ivlymeconsult.com/.

Sad to see this. Public health message is to wear socks & boots, or look for tick marks when walking in country. Epidemiology is related to climate change & agricultural practices. Profit based medicine is not the same as rational medicine.

I contracted Lyme about four years ago and it’s been a while since I’ve read up on the literature, but from what I do remember I think a couple of things are worth mentioning.

Based on my personal experience and those of friends that have also contracted Lyme disease, I do believe in the existence of some form of chronic Lyme. Whether this is due to the persistent existence of the bacteria in the human host or due to physiological changes that occurred because of its time spent in the body, I’m not sure. In my case, the short course of antibiotics alleviated the acute symptoms, but I’ve had various lingering systems that I am unable to attribute to an identifiable cause.

I’m not sure if this has changed much since I was reading up on Lyme, but the tests to detect the presence of B. burgdorferi were not considered very reliable. Some say that this bacterium is very skillful in hiding itself within the body.

If I had the choice to decide between the pseudoscience of a year’s worth of antiobiotics and the pseudoscience of a year’s worth of herbal supplements, I’m choosing the herbs…a commonly prescribed herbal cocktail for chronic Lyme is andrographis, cat’s claw, and resveratrol.

Two points. One of the things we are looking at with a could be/could be not Lyme diagnosis is the paradigm of modern medicine. We don’t go to the doctors to be told: You’re sick with something; we don’t know what it is; we don’t know how to cure it; just suffer. We are emotionally bound to a cause, effect, cure medical model. Unfortunately, not everything fits into that model and so sometimes we find ourselves thrust back into a magic as medicine past. We are given pretend cures for conditions we don’t understand because…well, it’s easier to believe in magic than simply to suffer in silence.
Secondly, if you want to be besieged by the power of Lyme anecdote start chatting with long-time residents of Martha’s Vineyard about who they know who has Lyme and when they found out about it and what was done to treat it. It feels like the Year of the Plague, only people didn’t realize the plague had happened until 10 or 20 years afterwards.

I’ve been following the issue of chronic Lyme disease closely for a number of reasons, and anecdote aside, think that the situation surrounding the diagnosis and treatment of Lyme disease and other tickborne diseases is more complex than most of the media has led the public to believe.

I hear that Lantos – like Dr. Lawrence Zemel of the Infectious Disease Society of America – has more or less stated that half of those patients who claim they have chronic Lyme disease have no evidence of having prior or active Lyme disease. Lantos stated, “Only 7–31% had active Lyme disease and 5–20% had previous Lyme disease,” he writes. “Among the remainder, 50–88% had no evidence of ever having had Lyme disease. Most of these patients had either an alternative medical diagnosis or a functional somatic syndrome such as chronic fatigue syndrome or fibromyalgia.”

If this is in fact the case, then we are still looking at up to 51% of the patient population in this group as either having had Lyme disease or currently having it – meaning that up to little more than half of patients’ persisting symptoms do correlate with evidence of having Lyme disease.

It is this population of which I am a part of, having had a textbook case of Lyme disease – known tickbite in endemic area, an EM rash, flu-like illness, severe joint pain and swollen lymph nodes – the whole nine yards – only to be followed by years of ongoing symptoms I did not have pre-infection.

So, when someone brings up the pseudoscience of “chronic Lyme disease”, understand that I might get a little testy because it seems almost inevitably, the cases which are highlighted in skeptical discussions are those Lantos states do not have evidence of Lyme disease. Whether that is accurate or not, what about the rest of us? (Side note: chronic fatigue syndrome and fibromyalgia are problematic diagnoses in their own way, too, as they are of unknown etiology.)

I want to know as much as the next person exactly what has led to persisting symptoms. After doing the research on my condition to the extent I have, I’m coming to the conclusion that more research is necessary. I am skeptical about their being “sides” to this debate in the first place and also think science has not come to a full understanding the process behind why we have persisting symptoms.

Embers et al’s recent study on persistence of Borrelia burgdorferi after antibiotic treatment in Rhesus macaques brings up the question of persistent infection after antibiotic treatment. More research is required on this, and persistence studies such as an NIH-NIAID xenodiagnosis study where patients with chronic Lyme disease are bitten by lab-raised ticks in order to see if they pick up the infection are underway. On the autoimmune angle for finding cause, Bockenstedt recently published a paper showing gfp concentration of Borrelial antigens in tendon tissue in mice, and the hypothesis is spirochetal antigens cause persisting symptoms long term. See this Research Blogging blog post for more info: http://spirochetesunwound.blogspot.com/2012/11/inflammatory-spirochete-debris-left.html

So one cannot avoid that persisting symptoms after initial infection and treatment or delayed treatment is an issue; the research is there and being conducted on it.

But in the meantime, people are suffering, and voting with their feet: The vast majority of patients in my situation think there is something to the persisting infection hypothesis, and treat with long term antibiotics. A number of them recover and report improvement in symptoms while on treatment.

Yes, it is anecdotal – true. And it doesn’t support the outcomes of some of those small clinical trials which were conducted. But perhaps instead of dismissing them, someone could step in and collect the data on these patients (with their consent, of course) based on how they are currently being treated, what the patient base is and common factors of different subpopulations, and so on – and see if any commonalities float to the top? This could be informative, to study patients who have made the decision accept this treatment and see how they fare.

Cassie, what am I missing? It seems to me the research protocol depends on the validity of an unproven, and counterintuitive assumption. A rash is a common response to many kinds of insect bites. We know it sometimes occurs after the initial tick bite in Lyme disease, but not always, and well before other symptoms appear. We do not know whether rashes occur if/when old infections are reactivated. So If you designed a study that only looks at cases with rashes, and you find all those cases are new infections, it seems to me all you’ve proved is that your study can’t answer the question you are asking: whether reactivation of old infections occurs. You need to use a different symptom as your indicator – I’m not sure what, but just because no other symptom is as obvious as the rash, that doesn’t mean it’s a valid study design. What am I failing to see here?

While I have not read the fulltext of the study yet, I agree that your logic path is one I traveled as well. An EM or “bull’s eye” rash is a key part of the case definition for acute Lyme disease – however, it’s not always present with infection, nor do all EM rashes signal the presence of infection.

Much of the media’s write-up on this study has conflated the existence of reinfection with the nonexistence of a chronic condition connected with Lyme disease – but it has also left out a huge chunk of the story about the significance of EM rashes in Lyme disease infection.

Dr. Jorge Benach of Stonybrook University has stated that if multiple “satellite” rashes show up weeks to months after initial infection, that the bacteria has disseminated. This may mean the patient needs a different course of treatment at this stage, so new rashes in this situation are important to separate from new EMs from a new infection.

Dr. Benjamin Luft has been doing extensive mapping of the genetics of different strains of Borrelia burgdorferi and has discovered some strains create a rash but no infection, some create a rash and infection, and some create no rash and infection. These strains can have varying targets within the body; varying levels of virulence.

And not long ago, Horizon Press published a book, “Borrelia: Molecular Biology, Host Infection, and Pathogenesis”, and it mentions big gaps in patient management around EM rashes: Some people who were screened to be subjects in studies were seropositive for Lyme but have never had ANY symptoms – whereas others went on to develop a case of late stage Lyme disease. (See pp. 501-502)

This is problematic for patients and doctors alike, who may have difficulty diagnosing the cause for the patients’ symptoms with no prior history/evidence of Lyme disease.
(Serology might help – but you have to suspect Lyme disease first.)

So, I am concerned about the emphasis on rashes and think either one has to suspect Lyme disease based on other symptoms and potential exposure to ticks – or we need better testing… Solid direct detection tests would be great, but we don’t have one yet. I’m waiting to see what GMU does with its nanotrapping test development… It’s antigen based; hopefully superior to existing serological tests. But again: First one must suspect Lyme, and if there is no EM rash present, where do you begin?

Thanks for all the insightful comments. Heather, you raise some good questions, and I don’t know the answers. I’ve contacted the author of the study and hope to hear back from him soon.

I also want to note that the CDC and other infectious disease authorities recognize that in some people lyme symptoms can linger after treatment. The debate is focused on whether those symptoms are due to persistent active infection or damage caused by the infection. It may seem like trivial debate, but it’s not. Because if the answer is tissue damage or an autoimmune reaction, no amount of antibiotics can help. Even if this study turns out to be flawed or not all that applicable to the wider chronic lyme debate, there still isn’t solid evidence for chronic infection being the source of lingering lyme symptoms.

Cassie, have you read “Cure Unkown”? It’s an exploration of Lyme disease written by Pamela Weintraub, who is the executive editor at Discover. It offers quite a nuanced take on the illness. She’s a top-notch science journalist and she says that she and her family had chronic Lyme disease.

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Michelle and Ann are both in the 2017 edition of Best American Science and Nature Writing, Michelle for The Parks of Tomorrow in National Geographic, Ann for Inside the Breakthrough Starshot Mission to Alpha Centauri in Scientific American. Notable mentions in the same edition were Christie’s Failure is Moving Science Forward in FiveThirtyEight.com and Erik’s Why Great Sharks Are Still a Mystery to Us for National Geographic.

Christie won a 2016 AAAS-Kavli Science Journalism award (big deal) for a FiveThirtyEight.com series on p-hacking your way to scientific glory. One of that series, called Science Isn’t Broken also won a Kantor Information is Beautiful award. Classic Christie: “When the first analysis you try doesn’t spit out the result you want, you keep trying until you find one that does.”

Erik’s first book, called Suggestible You, just came out. Apparently when you’re raised Christian Scientist, you develop an abiding interest in what affects peoples’ beliefs. Classic Erik: “Your brain doesn’t want to be wrong — and in order for expectation to match reality, it’s willing to bend a few rules or even cheat outright.”

Emma won a 2016 Science-in-Society award given by the NASW for Handle with Care published in the May/June 2015 issue of Orion Magazine. Classic Emma: “Suddenly the vacant lot in Detroit is wilder than Yellowstone . . .”